Dear Megan,

I have osteopenia myself and I was the one that brought up having a bone density test done to my prior Endos. It amazes me that I was the one that had to ask but anyway the Endo that I saw in the hospital and the Endo that I have now brought up the need for a density test so 2 out of five ??? hummm. 

 You have to deal with the here and now and hope that it gets better for this generation. I would of like to have known about bone density loss when I was 20 but the Endos back then just blew off any question I had. "Everything is fine (pat on the head) You’re imagining things...Surgery ? Why do you want to what was done shhhhhh...best not to dwell " and that is when I started going to the library to read exactly what CAH was really about and also acquired my medical records.

Knowledge is power and this woman Endo back when I was in my early 20’s actually told me not to read about CAH. My gosh *^%&%^* just tell us about the possibility of osteoporosis so we can be prepared. What, they think this is going to frighten me after being a display model for all those medical students? Those Endos and medical students never did anything but satisfy their own curiosity. Tell me about osteoporosis or adrenal crisis or the surgeries?  Nope, it wasn’t part of their plan and I thank God for my own instincts about needing more med and the realization that because maybe the way they were trained that Endos aren’t comfortable with sharing REAL info about CAH.

I had an Endo tell me that CAH is a trauma to the child and parent. I can buy that CAH is a trauma to the parent with all those guilt issues I guess but I’ll never understand because CAH is normal to me and not a trauma. I realized that not once in my life have I ever cried about CAH but I have cried over not being informed about my own medical condition, the surgeries, and the behavior of the doctors. I can go on a rant (lol) well on the positive side as far as the bone loss goes, I look at it this way because at least we learned about bone loss in our late 20’s and how serious it may be. Other women ignore all of this until their 50’s/60’s.  Finding out that alcohol consumption increased bone density loss was enough to make me stop that cold. I take Actonel once a week but even though my insurance covers some of the prescription, it cost me $ 30.00 out of pocket every month for just the four pills but without question it is worth it. Plus, I take calcium supplements and it took me awhile to remember to take those but I am better about it now.  

I don’t know if this will help you but I was taking prednisone 2x/day for 32 years and the Endo that I have now switched me to hydrocortiosne 3x/day. Less strength and better on the body in my case and the Endo is pleased with the lab work. I take the hydro between 6am-7am(10mg)  2pm-4pm(5mg)  10pm-12midnight (10mg) and try to stick to this schedule all the time.  

Good Luck,

Aimee